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Searching for the Real Susan G. Komen

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Last week’s uproar over the Susan G. Komen Foundation’s anti-choice antics led me to want to know more about the young woman for whom the breast cancer awareness behemoth is named. But after a couple of days of Googling, it became clear that after 32 years, poor Suzy Komen is little more than a name on corporate letterhead. Her story is forever lost, filtered through her sister, Nancy Brinker’s, perceptions of the events and how she has decided that the story of the real Susan Komen should be presented.

If you google Susan G. Komen, you will be rewarded with links that speak only of the foundation. Aside from Brinker’s memoir, which is really more about her than her sister, precious little information on Suzy Komen exists.

One thing I did find, and it’s also not a shock because the Internet is stuffed with all manner of griefy culture things, was a picture of Suzy’s grave. And it immediately occurred to me after reading the inscription that Suzy isn’t the only one left out in cold as far as her story goes. So was her husband.

She is listed as daughter, mother and sister. Presumably the children had a father so at some point, she was a wife. Why isn’t that mentioned? A quick peek at the “official” Komen Foundation historical record on her mentions a husband, Stan, her high school sweetheart, but then it drones on with barely a mention of him or their two children again. Judging from the Foundation’s biography of Suzy, the only people who truly counted in her life were her parents and, of course, her sister.

Knowing what I do about the widow world and the odd notions that extended family and the non-widowed have about the whole “til do you part” and the general scorn there is for widowed who move on at an “unseemly” pace, I came to three possible conclusions.

Stan Komen, Suzy’s husband:

bailed on her while she was ill and therefore earned his exile.

remarried too soon for her family’s liking

doesn’t care much for the happy, happy, joy, joy Disney Princess pink face that Komen’s spin has slathered all over the disease that killed his wife and so he declines to be a part of it.

Stan Komen owned a wine and spirits store in Peoria, Illinois. He still does. You can google him and it. I even found a few news articles that refer to him as a successful business owner and a person who offers advice to others in his industry. There is no mention of a second marriage, but I would guess he has moved on. He was a young man with young children, and it’s doubtful that he remained single (though I wouldn’t rule it out).

But no explanation of his, or his children’s, absence from the Pink juggernaut’s publicity machine. Cuz, let’s be real, run, walk , jump and knit bras for the cure owes its existence to bereaved spouses, children and extended family and friends. Widowed who involve themselves in the cause to eliminate what killed their spouses is cliché.

Colour me confused then by his absence from his wife’s final legacy on the place where she rests. Even if he did remarry that doesn’t make her less of a wife to him. That was part of who she was and should be included regardless of what he moved on to.

I found the whole thing rather sad. Suzy asked her sister to “find a cure” for the disease that killed her. Komen donates very little really to research. The bulk of what they collect from the husbands, children, family and friends of women dead or dying is funneled to pay salaries of Komen employees (Nancy herself makes over $400 thousand a year as CEO) or is used to lobby Congress on behalf of insurance pharmaceutical companies or promote Pink ribbon products that often contain chemicals that are thought/known to cause breast cancer and to promote events to promote breast cancer “awareness”.

The last is funny because women in North America are so aware of breast cancer that they don’t know that they are actually more likely to die of cardiovascular disease. Fear-mongering has paid off so well for Komen that the latest research on the risks of overscreening via mammograms are ignored or treated like junk science.

Suzy would be proud, I am sure, of the fact that 32 years after her sister promised to find a cure for breast cancer, a woman with stage four of the disease has nearly an identical survival rate as she would have had 50 years ago.

I am still left wondering who Suzy and Stan Komen were. Her silence on last week’s events and her sister’s efforts over the last three decades is understandable given that she is dead and all, but his? Telling? Maybe.

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12 thoughts on “Searching for the Real Susan G. Komen”

Ann,
You were right in your first assumption. Stan Komen baled and has to live with it. Susie won the hearts of wonderful people in the Junior League in Peoria who would not want her reputation tarnished as it would serve no purpose. Her estrangement caused by the disease was therefore hushed up.. I’ll add that Stan was super good looking and had many relationships following Susie’s death. Has it occurred to you that her children may receive a share of the donations as consultants on the board-? Your article is brilliant and you are astte.. “Anonymous,” formerly of Peoria.

It wouldn’t surprise me at all about who gets a cut of the donations to the foundation. The so-called “non-profits” have made wealthy people out of many.

I am not sure though about the wisdom of keeping the real story of Ms.Komen’s life a secret. The white-washing serves no purpose except to hide a truth that many, many cancer patients, their spouses and their extended families need to know and that is – catastrophic illness has a profound impact on relationships, family, and friendships.

I think too many people in situations like this are expected to live up a Hollywood fantasy of what kind of cancer patient or spouse of a cancer patient you should be. Perfect. Saintly. Sucking it up with a smile.

The reality of being the spouse of someone with a terminal illness is less pretty and not a one size fits all stereo-type.

Really, the only people who know what is going on in a relationship are the people in it. Everyone else is just guessing based on half-facts, innuendo and projection.

Stan Komen might well have bailed. Or he could have just as easily gotten tired of being the one to hold down a job and raise the kids and watch his wife choose to be with her sister and parents over their home and marriage.

But, the facts have been buried and so the Komen Foundation can spin Susie any way they like and continue to misrepresent what it is they are really doing with all the money they raise and continue to promote the fallacy that “awareness” has done anything other than foist a questionable testing regime upon women resulting in over-diagnosis and over-treatment of non-lethal illness while neglecting the very sickest of breast cancer patients because they don’t fit the plucky, optimistic terminally ill person mold.

The truth, however ugly, is more often than not the better option in the long run.

I knew Suzi. I am originally from Peoria, Illinois. Our kids went to the same nursery school, Big Top. Her husband Stan did not bail out on her nor did he remarry soon after her death. Her children were kept out of the media as they were very young. Her parents were extremely nice. Her mom is still living. Just thought I would add since I know.

Thanks for sharing. I had found it strange that he seemed so absent from her story because usually that means the widowed spouse is in some kind of “doghouse” with the deceased’s family. Perhaps he chooses not to participate then, which also makes sense as it is sometimes hard to hear other people make a “closer relationship” claim on your spouse given all that you went through too.

I am writing a speech about Susan G. Komen, the person, not the foundation. It is true that there is precious little information on her. I find this very sad. However, I do think it is awesome how this one woman who lived only 36 short years has touched so many others. You can not know how many women have been educated about or saved by the Susan G. Komen Foundation’s efforts. I do not agree with all of the things that the foundation or Nancy Brinker says or does. I am thankful for the good works and efforts of the foundation. I do wish more was known about the person who started it all though.

this is pretty fascinating. there is also somethin else at work here – i’ve been struggling to put my finger on it, or find the words for it, but i think you’ve teased it out…

with early detection of breast cancer the non-aggressive cancers can be treated with minimal disruption and risk. mine was lumpectomy/radiation. statistical decision models for my type of cancer, size of the nugget and whatnot gave me a 97% chance that THAT cancer would not return in 10 years. Adding chemo? 98%. No thanks. Adding tamoxifen (hormonal chemo)? 98%. i ignored the advice of my oncologist and skipped the tamoxifen.

my choices. informed decisions, i believe, for my circumstances, and the degree of risk i was willing to accept.

for the past five years, i do not wear my cancer as a badge. i do not consider myself a ‘cancer survivor’ any more than i’d label myself a ‘rheumatic fever survivor’ or a ‘mononeucleosi survivor’, even though i’ve had those, too.

but we are now glorifying those women who get through breast cancer. whether it was the easy version (such as mine) or the really nasty shit that other women get, we are asked to stand at luncheons, offered seats at the head table at fundraising events, etc.

bottom line – organizations like Komen are feeding victimhood. holding us all up as “brave”? give me a break. doe it make women envious that we are so courageous? make them wish they had cancer so they could be special, too? maybe not yet… but unless this train is derailed, it will become a badge of honor to have gotten cancer in your titty.

sorry for the lengthy rant here. first time i’ve tried to articulate this…

No apologies necessary. I tried to explain this in similar terms to Rob the other day when the whole Komen thing had me wound up.

I am a fair skinned red head. My skin really doesn’t like the sun. I burn. It gives me rashes. I have had numerous lesions of varying threat levels burned or cut off. Nothing that would have killed me but could have been deforming if left unattended for too long. Even so, I wouldn’t dream of calling myself a skin cancer survivor. I survived nothing. The threat to vanity higher than the threat to my life. I endured a few second degree burns and shallow incisions. It would be an insult to people who are truly ill and fighting for their lives for me to claim some sort of victory lap.

The truth is as you say. Women should be well-informed with options at their disposal but not frightened by the statistics drumbeat which plays up the risk and overlooks the greater threats to female health (like the mounting assault on birth control for example). We should not allow ourselves to be distracted from the real dangers – carcinogens that laden our food and water and are routinely added to cosmetics, perfumes, and scented candles (all pretty pink products of the machine). We’ve been tea partied away from activism and dutifully submitted to tame pointless gestures that offer false hope and half-truths.

When I was a little girl, the world was opening up for women in ways that had really never been possible before and now I watch as women sashay backwards with pink hand prints on their breasts as though the only thing we have to offer the world is our tits.

“Suzy would be proud, I am sure, of the fact that 32 years after her sister promised to find a cure for breast cancer, a woman with stage four of the disease has nearly an identical survival rate as she would have had 50 years ago.”

This is sad.

“The last is funny because women in North America are so aware of breast cancer that they don’t know that they are actually more likely to die of cardiovascular disease.”

Cardiovascular disease does have a “jump”. Kids bring their skipping ropes to school and their sponsors pay them to skip to raise money. But it’s seen as an old people’s thing, which is ironic because breast cancer is actually more prevalent in post-menopausal women than in young ones. In fact, the WHO has recommended for a while that only post-menopausal women get mammograms unless they have other risk factors.

Komen went wrong where all good intentions go wrong. It took itself too seriously and sold out in increments thinking that the ends justified it. The only thing that happens in the end, however, is that you are left without your principles and no closer to your end than you were when you began because you strayed off the path to wander in the pretty weeds.